Tag: Alzheimers

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Book Reviews

“The Vanishing Half” by Brit Bennett

I’ve been in two minds as to whether I should include Brit Bennett’s bestselling second novel, The Vanishing Half in my list of Dementia fiction narratives. The greater part of the novel does not touch upon the subject of Dementia. It’s an engaging, and incredibly timely, exploration of race issues in North America. Twins, Stella and Desiree Vignes, have grown up in Mallard, a tiny rural southern black community where lightness of skin is seen as desirable. The twins escape Mallard at the earliest opportunity and move to the big city where their lives diverge and take very different paths. Desiree marries a black man and after the relationship falls apart, moves back to her mother’s house in Mallard, with her daughter who is significantly darker than her. Stella, finding she can pass as white, marries a rich white man and moves to the West coast where her daughter grows up entirely unaware that she is mixed race. 

It’s a brilliant novel and a really engaging read and, like many contemporary novels, does not touch on the theme of Dementia until the final chapters. Lately, I’ve been noticing this as a reoccurring trope in contemporary fiction, especially novels which follow a kind of family saga narrative arc. As the protagonists -in this case the twins’ mother- grows older, they develop Dementia. I’m not questioning the appropriateness of Bennett’s choice to explore Mrs Vignes’ Dementia experience so late in the novel. However, in some novels, Dementia can feel like a tagged on afterthought or a neat way to resolve unresolvable plot issues. I’ve been noticing an increasing tendency to use a character with Dementia as a plot device. Confusion, memory loss and failure to recognise familiar people can, in fictional terms, be a handy device for creating mystery or suspending a moment of revelation. This is particularly apparent in the current craze for Dementia narratives in crime fiction. (I hope to write more about this at a later date). 

In The Vanishing Half, Mrs Vignes’ Dementia allows Bennett to swiftly and seamlessly reintroduce the long lost twin Stella, who has returned to Mallard decades after her initial escape. Her mother’s confusion and her inability to tell past from present means she accepts her prodigal daughter’s unexpected return with absolutely no questions. For Mrs Vignes’ it’s as if Stella never left. The cynic in me, could argue that Bennett uses Dementia as a handy device to resolve a lot of her plot lines in a swift and overly simplistic way. It’s awfully neat, to watch a family who’ve been fragmented and at loggerheads for three hundred pages, become united by their mother and grandmother’s Dementia for a handful of pages at the novel’s end. However, for the most part Bennet’s portrayal of Mrs Vignes’ Alzheimer’s is reasonably convincing and it’s so rare to see an exploration of Dementia within a black community I felt it important to include The Vanishing Half. 

I also felt compelled to note that Bennett’s inclusion of the line, “Alzheimer’s Disease was hereditary, which meant that Desiree would always worry about developing in,” is neither helpful nor accurate. Less than 1% of Dementia diagnosis are hereditary and ill-informed statements like this can cause distress and even panic in readers. I enjoyed The Vanishing Half immensely and I will defend to the hilt, the writer’s right to explore and record other’s experiences. But when it comes to publishing factual statements like the one above, especially in widely read novels like The Vanishing Half, I think it’s absolutely essential that the information conveyed is well-researched and accurate.

The Vanishing Half was published by Dialogue Books in 2020

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Book Reviews

“I Remain in Darkness” by Annie Ernaux

Translated from the French by Tanya Leslie

This slim volume was my first experience of the French author Annie Ernaux, a writer I’ve been intending to read for quite some time. This particular book has been namechecked in so many essays and articles I’ve read in the last few weeks it felt like the perfect opportunity to begin my reading relationship with Ernaux. I enjoyed I Remain in Darkness so much I have already ordered several more of her books. The writing is razor sharp, analytical and incredibly well-observed. Though it’s often painfully focused on the banal, repetitive and unpleasant aspects of watching a loved one’s journey with Dementia the language is so beautiful and each word so perfectly placed it still reads a little like prose poetry.

“My mother’s colour is fading. To grow old is to fade, to become transparent.”

Chronicling a period of four years, Ernaux sketches small intimate portraits of moments with her mother as an Alzheimer’s diagnosis gradually takes over her life. She’s moved from home into a residential care facility where Ernaux visits her frequently and also give us snapshots into the lives and experiences of the other residents. Much is made of the way Dementia removes privacy and autonomy. This is mostly viewed as a negative consequence of the illness. However, Ernaux also effectively explores the interdependency of the carer/cared for relationship. At times she seems to relish the closeness she’s found in being so intimately involved in her mother’s everyday life. She weaves in allusions to her own childhood, when her mother cared for her, the relationship she has with her two children and the way she is now caring for her mother like a child. There is a sense that this interdependency is both natural and at the same time shameful; that people are designed to care for each other, yet the harsh realities of caring are not something to be openly talked about.

“His mother too is suffering from Alzheimer’s; he talks about in a low voice, he is ashamed. Everyone is ashamed.”

Again and again Ernaux writes of her reluctance to write about her mother’s illness so honestly as if, in doing so, she is violating trust. And yet she cannot stop herself. Her own story is so closely tied to her mother’s story in order to understand herself she must explore her mother’s experience. At one point she goes as far as to say, (of her mother’s body), “the body which I see is also mine.” More than any other first person account I’ve read so far, I Remain in Darkness, seeks to place the carer, (and by default), the reader in a position of intimate empathy with the person who is living with dementia. As such it is a deeply upsetting but essential read.

I Remain in Darkness is a meditation on ageing, family, loss, love and memory which does not shy away from recording the more troubling aspects of Dementia. There is an ongoing focus upon the indignities associated with the illness as Ernaux observes her mother losing both her mental and physical capabilities. There is also humour present here, warmth and an attempt to explore both the present and past self of a person living with Dementia. A lot is left open to interpretation and there’s no attempt made to neatly join up the dots or offer a comforting resolution in the closing pages. As alluded to in the title, Ernaux and her mother remain largely in darkness throughout the book, struggling to find each other in the dark. I felt equally lost at times, yet relished the chance to glimpse what life might be like for a person living with Dementia who is constantly trying to find herself. I would recommend this book as an important read.

I Remain in Darkness was published by Fitzcarraldo Editions in 2020

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Book Reviews

“Still Alice” by Lisa Genova

Many readers will have come to Still Alice via the 2015 big screen adaptation starring Julianne Moore in the title role. Moore, quite justifiably, won a Golden Globe for her portrayal of Alice, the university professor, wife and mother who finds herself diagnosed with Dementia at the relatively early age of fifty. Genova chooses to focus her novel on a reasonably rare type of Alzheimer’s which can be passed genetically from parents to children. A large part of the novel explores the relationship between Alice and her three children as they decide whether to have a genetic test and how they’ll deal with whatever the results turn up. The Dementia also places strain upon Alice’s close family ties as her children and her husband have to learn how to navigate her rapid decline, repositioning  themselves as carers when they’ve previously been so dependent upon her. The third person narration offers us small glimpses into their confusion, disappointment and anxiety though most of the novel is focused on Alice. She is the hero of this quest.

I’d argue strongly that Still Alice is a quest narrative with much of the novel exploring ways in which Alice can find a way triumph over her diagnosis. You might argue that the possibility of suicide is introduced earlyish and revisited later when Alice is too confused to follow her own emergency exit instructions and consequently continues living by default. However, even the idea of an end of life plan could be seen as a kind of quest, with Alice retaining autonomy over her own existence. Genova is determined to find meaning and potential in the midst of Alice’s difficult story. A gifted public speaker and academic by trade, Alice gives a paper at a conference on Dementia, reminding the reader that she is still herself and can still contribute to society in spite of her diagnosis. Alice is also portrayed advocating for people living with Dementia and beginning a kind of support group for those diagnosed with the condition. The meaning is clearly implied. Alice is still an active and useful member of society. She is, in her own way, making Alzheimer’s work for her.

At several point, most notably later in the novel, Genova explores the complex tensions inherent within how Alice is viewed by the people around her. Her family are desperate for her to remain active, engaged and essentially, still herself. And yet, they’ve already begun the process of infantilising her as their roles as carers begin to trump their previously dependent roles.

“They talked about her, in front of her, as if she were deaf. They talked about her, in front of her, without including her, as if she had Alzheimer’s disease.”

Alice’s decline is rapid and brutal, Genova dates her chapters so the reader can see just how quickly the disease progresses over a period of two years. As the novel concludes Alice’s observations and interpretations about the world around her become less sophisticated, and in some ways, less anxious. By the final chapter, she’s lost the ability to recognise her own daughter and yet seems to be more peaceful than in the opening chapters where her mental confusion was a constant distress. 

“Everyone walked, busy on their way to where they must go. She didn’t need to go anywhere. She felt lucky about this.”

It’s a comforting way to conclude a novel about a woman whose life has been gradually erased. It’s hard not to wonder whether Genova, compromises accuracy, to give her readers a satisfying conclusion. The novel’s ending raises some of the biggest questions implicit in all serious attempts to write about Dementia: how cognisant is the person living with Dementia, especially towards the end of their journey? And, if people living with Dementia are relatively cognisant, even late into their diagnosis, is it less troubling for the rest of us, as friends, family members and interested bystander, to simply pretend they’re not?

Still Alice was published by Simon and Schuster in 2007 

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“Alzheimer’s and a Spoon” by Liz Breslin

Alzheimer’s and a Spoon – Liz Breslin

In New Zealand-based poet Liz Breslin’s first full collection she turns her attention to her own grandmother’s experience with Dementia. Her Polish babcia, Manuela was a devout Catholic, a soldier in the Warsaw uprising and an incredibly interesting women. In these 75 short poems Breslin documents her life, her experience of Alzheimer’s and her death. She includes several poems based on the research and case notes of Alois Alzheimer, the German psychiatrist and neuropathologist credited with first discovering the disease. 

Peppered with photographs illustrating parts of her grandmother’s story and intriguingly shaped word poems, the collection isn’t afraid to play with form. Snippets from recorded interviews with Breslin’s grandmother are woven into the poetry, whilst in other places, Alzheimer’s own notes are presented as found poems. As the poet skips from one form to the other, dipping in and out of found text, thoughts, narrative and impression she effectively conveys a feeling of confusion and disorientation; a most fitting evocation for a poetry collection concerned with exploring the experience of Dementia. There’s a sense here of language and narrative falling apart; “where are they off to, these words/ I am losing?” 

However, Breslin’s main focus is the gradual erosion of her grandmother’s memory. I was particularly impressed by the variety of metaphors and images she uses to express this gradual loss. In Eulogy at the Oxford Oratory, memory is powerfully and tenderly equated with a set of her grandmother’s rosary beads. 

“Warm with memory, some will

spill. Some I’ll keep in corners,

hidden glimmers. Much has been lost.”

Alzheimer’s and a Spoon is an honest, warm and occasionally funny look at what it’s like to watch a loved one forget their own past. It explores issues of culture, distance, language  and history through the lens of Dementia. There’s a big life and a lot of story tucked between the lines of Breslin’s short poems. When, at the beginning of dichotomy, she writes,

“Please pass me a scrumpled ball through the bars

secret me the memories you don’t speak

I hear the whispers of your stalwart war

but never from your tongue, never for real

it’s just stories, right?”

Breslin gives us a little insight into the mammoth task she’s set herself; telling the story of a woman who can no longer tell her own story.

Alzheimer’s and a Spoon was published by Otago University Press in 2017 

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“Goodbye, Vitamin” by Rachel Khong

There are a number of reasons why I really enjoyed the American writer, Rachel Khong’s debut novel. For one thing it’s very funny. It tackles a relatively serious subject with gravity where gravity’s required and also buckets of humour and wit. Sometimes the humour and pathos are mixed together, as in the following exchange between Ruth and her father, whose Alzheimer’s is beginning to make him confused.

“I’m your daughter,” I say.

“You sound different,” he says.

“How?” I say.

“More sonorous,” is what he says.

Khong isn’t afraid to laugh in the midst of the saddest moments. There’s something very familiar about this as the absurdity of living with Dementia often means experiencing the whole spectrum of emotions simultaneously. The other thing I particularly enjoyed about Goodbye, Vitamin is the portrayal of a person who is attempting to maintain a normal existence even as their Alzheimer’s takes hold. For many people there is a period after diagnosis when they continue to work and live as closely as possible to their normal routine. This is rarely depicted in films or books. Ruth’s father, a much-loved history professor, doesn’t want to stop teaching even though his boss and colleagues have noticed his behaviour’s becoming erratic and have asked him to step down from his teaching role. What follows is an elaborate plan whereby Ruth, conspiring with his students, set up sessions off campus so her father can continue to teach the classes he loves.

“The idea Theo and I plant into Dad’s head is that because we’re learning about the Los Angeles Aqueduct, we should take an educational field trip to go visit it.”

Ruth herself is the narrator of the novel. Her story is recounted in chronological diary excerpts where readers are presented with a snapshot of her personal life alongside her attempts to care for and connect with her dad. Ruth isn’t having an easy time of it. She’s thirty years old, recently single and back home living with her parents. She’s frustrated that there isn’t a miracle cure for either her dad’s condition or the mess she’s made of her life. In the absence of medical remedies she begins to learn that love and being gentle with each other is the best way to navigate this turbulent time. Ruth seems to find it easiest to make sense of the journey her father is taking if she takes each moment for what it is and savours their time together. There might not be much she can do for her father, but she can spend significant time with him.

“Today, I caught you in the garage, eating the peaches from the earthquake kit. I joined you. We drank the syrup and then we drank the packets of water.

Here I am, in lieu of you, collecting the moments.”

This is such a warm and generous wee novel. It’s not without its heartbreaking moments. At one point her father, realising what Ruth’s sacrificing, encourages her to move on with her life and I found this exchange particularly poignant

“You didn’t want me feeling obligated to stay. You said you didn’t want me feeling guilty. You said you didn’t want me seeing you act loony tunes.”

Khong has Ruth respond with sensitivity and quick humour, giving her father a dose of daughterly cheek. It’s in these small and incredibly familiar moments that Goodbye, Vitamin really soars. This is such a realistic picture of a tight knit family dealing with a difficult situation in the only way they know how: food, time, love and taking the piss.

Goodbye Vitamin was published by Schribner in 2017

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“We Are Not Ourselves” by Matthew Thomas

We Are Not Ourselves was one of the very first Dementia narratives I encountered and it remains one of the best examples of writing about Dementia I’ve come across in any novel. It is an epic saga, in the old-fashioned sense; a novel which follows an American couple, Eileen and Ed Leary from childhood, through courtship and marriage to the establishment of their own family. It’s very much a rags to riches, boy meets girl, American dream story and the plot arc is incredibly familiar until around half way through the book. In his early fifties, Ed’s behaviour starts to become increasingly erratic. Eileen is concerned about her husband and eventually convinces him to see a doctor. “If nothing’s wrong with him,” she tells her own doctor, “I’m going to divorce him. I can’t take it anymore.”

Eventually Ed is diagnosed with early onset Alzheimer’s. The news turns the Leary’s world upside down, but Eileen insists from the outset, “we are going to carry this with dignity and grace.” This is a novel about a family who stick together through good times and desperately difficult times. It’s also a novel about how a life change as radical and disruptive as a Dementia diagnosis can turn cosy notions of the American dream upside down. Eileen manages to get her husband included in a clinical drug trial and even fantasises that the drugs he’s given might return him to his old, ‘normal’ self. However, in reality, she knows it doesn’t work like this with Dementia,

“His real self wasn’t hiding in there waiting to be sprung for a day of freedom. This was his real self now.”

We Are Not Ourselves excels beyond other Dementia narratives in its handling of the specifics associated with an early onset diagnosis. Thomas explores family dynamics: Ed’s reluctance to tell his son, Connell about his illness and his fear that the condition might be hereditary. He takes a close look at the Leary’s marriage, as the role of provider quickly shifts. There’s also an incredible amount of realistic detail around the financial support available for people living with Dementia in the USA. At one point Eileen is encouraged to divorce her own husband as this would classify as eligible for financial assistance. The novel also refuses to shy away from the upsetting, and very realistic depiction, of a youngish man with Dementia attempting to retain his job, his status, salary and dignity for as long as he can, whilst the illness makes this more and more difficult to do. Thomas works in issues around class, finances and societal shame, raising big questions about where, if anywhere, Dementia fits into American society with its notions of personal and familial success.

There’s a section towards the end of this novel where Connell, as a young man, steps up to become one of his father’s carers and it remains the most straightforward but powerful piece of writing about Dementia I’ve ever read. This section stayed with me long after I’d finished the novel and still comes to mind from time to time. Thomas writes so well about the complex shift in relationship between parent and child as responsibility for physical and emotional support moves from the father to the son. There’s no excess of emotion or sentiment here, just beautiful, honest, matter-of-fact writing about how difficult it is to feed and change your own adult father, and also what a strange privilege this is.

At almost 600 pages, We Are Not Ourselves is a reasonably long read, but it’s the sort of novel which draws you in. Thomas introduces his readers to the Learys slowly, ushering us into their home, their family and, ultimately, their problems so that, by the final few chapters, we feel part of the family, fully able to empathise with their joys and their pains.

We Are Not Ourselves was published by Fourth Estate in 2015

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“An Absent Mind” by Eric Rill

An Absent Mind is a slim novel set in contemporary Canada. It explores the impact of a Dementia diagnosis on a close family unit. The novel opens with the patriarch, Saul beginning to acknowledge his own mental confusion. It moves through his Alzheimer’s diagnosis, the advent of the illness and subsequent decline, his move to a care facility and eventually, both his own death and that of his wife, Monique whom he actually outlives. The story is told from the perspective of five different characters, all of whom speak directly to the reader in first person monologues. We meet Saul himself, a proud and occasionally difficult Jewish man, used to getting his own way, and his longsuffering wife Monique who isn’t even certain she’s made the right decision in staying married for so long to such an overbearing man.

“Given everything, would I do it all over again? Maybe. Maybe not. But I made my choice years ago, and I am almost sixty-six and a grandmother.”

The other monologues are delivered by Saul’s son Joey, with whom he has a troubled relationship, his devoted daughter Florence and the Alzheimer’s specialist who oversees Saul’s treatment and care. The first person sections narrated by Saul himself give an excellent insight into the progress of his illness and how frustrated he is with his situation. It’s not easy for a man as powerful and proud as Saul to watch his autonomy gradually disappear. His accounts of events, lucid at first, become increasingly rambling and confusing as the novel proceeds. Saul’s chapters become shorter as his grasp on language erodes, until the final few chapters consist of nothing but strange composite words, (“Just…hEr as Pretti…Choo fLeur,”) which can be interpreted as meaningful within the context of his story, but are nonsensical to the uninformed. However, what makes An Absent Mind a truly unique reading experience in regards to Dementia, is the way it depicts the collateral damage inflicted upon those close to Saul.

Monique struggles to serve a now vulnerable man who has often made himself deliberately hard to like. Saul isn’t particularly affectionate or grateful. He has always been a demanding man. Now, faced with becoming her husband’s carer, Monique wears herself down physically and mentally trying to look after someone who never went out of his way to look after her. It’s a familiar and very believable snapshot of what many families and partners face when a difficult person develops Dementia. Rill is brave and honest to state so bluntly that an obnoxious person who is living with Dementia will most likely be as unlikable as they were before developing the illness. Joey also struggles with this. His father never tells him he loves him and is constantly putting his son down. Joey finds it hard to love and feel loved by his father. It’s only after Saul loses his ability to communicate that Joey finds a note scribbled in his father’s handwriting, 

“Dear Joey, I never told you while I was alive how much I loved you and how proud I am…”

Rather than bringing some sense of closure, this admission leads Joey to wonder why his father never once, in forty years, uttered these words himself. An Absent Mind is a novel about families and the complex and subtle ways in which people can both love and utterly devastate each other. It’s a novel about missed opportunities and important truths which have gone unsaid, dependency, disappointment and failed expectations. All these issues are present in most families. However, Rill in his novel, exemplifies the way Dementia will exasperate existing problems and expose a family’s fault lines. He paints a bleak but unflinchingly honest portrait of a real family trying to muddle through.

An Absent Mind was published by Lake Union in 2015